A UNSW initiative aims to co-design with - rather than merely consult - people living with dementia to develop new models of rights-based care.
When Theresa Flavin began her advocacy in dementia and aged care, she was struck by how fragmented the support system was.
"In research, older people and those with dementia were kept at arm's length," she recalls. "It felt like the system was built around us, not for us."
Diagnosed with younger onset dementia, Ms Flavin is now a Lived Experience Dementia Consultant on a UNSW project aimed at reshaping decision-making in aged care.
Led by Dr Craig Sinclair from the UNSW School of Psychology, the project helps providers enact requirements under the new Aged Care Act and Strengthened Quality Standards , effective November 2025.
The changes include the introduction of a new statement of a person's right to independence, choice, quality care, privacy, and staying socially connected.
The changes also introduced higher standards of care, and higher penalties if they're not met, as well as whistleblower protections for people reporting concerns.
"Moving an aged care sector that provides care for 1.3 million people to a rights-based model is a big task," says Dr Sinclair.
"We're shifting from a risk-averse, substitute decision-making model to supported decision-making, where people should be assisted and guided, not overridden."
Central to the project is co-design, not just with researchers and providers, but with those who will use the services.
As a chief investigator, Ms Flavin ensures that people with dementia are actively engaged in shaping the training and tools being developed.
"True co-design means working with the end users," she says. "Many projects miss this, consulting stakeholders who aren't the actual users.
"A lot of the time, the words of the person with dementia are treated as a superficial add on.
"I think it's deeply, deeply unfair to just mine us and discard us, our society is already doing that, and social science needs to lift their game."
Video: UNSW
Ms Flavin will co-lead a working group of people with lived experience of dementia and aged care service users, who will draw on their experiences to refine training resources for aged care staff.
"This group is our laboratory," says Dr Sinclair. "Theresa and the working group hold us accountable, ensuring our work is genuinely shaped by people with lived experiences."
Ms Flavin's background in regulation and risk management helps address aged care's entrenched issues.
"In finance, risk is about managing uncertainty around assets. In aged care, the 'risk' often seems to be the person themselves," she says.
"Institutions manage people instead of risk. That's not care, it's control."
Institutions manage people instead of risk. That's not care, it's control.
"A man who enjoys a pipe after dinner may be banned from smoking in a care home due to occupational health policies, but, if he's outside, away from others breathing in his smoke, he should have a right to make choices about his own life," says Ms Flavin.
"What if he prefers showering at night instead of the morning? Often, that's not allowed either. Where's the dignity in that?"
The project promotes supported decision-making. "It's about enabling people to live well with dementia, not just keeping them safe," says Dr Sinclair.
This shift in Australia aligns with global movements, such as the UN's exploration of a Convention on the Rights of Older People.
"We're anticipating this change," says Ms Flavin. "We're bringing the human rights of older people to the attention of providers and the people themselves. You can't claim a right you don't know you have."
The project will focus on training aged care staff who care for those living with dementia or other acquired disabilities in aged care settings.
Teaching aged care workers is crucial, says Ms Flavin, as they will pass this knowledge on to older people and their families.
"Families will realise they can't just make decisions for their parents. That's a tremendous change."
While the disability sector has long embraced co-design and lived experience, dementia care is lagging. "Visibility matters in real-world outcomes," says Ms Flavin. "It's empowering, and practical, because people with dementia know what works."
Partnering with Brightwater Care Group, BaptistCare, and the Older Persons Advocacy Network, the team aims to not just create better tools but shift mindsets.
As the project rolls out, the team will trial its training resources with partner organisations.
"This is about the difference between suppression and support," says Ms Flavin. "Support means seeing the person, not the diagnosis. Rights don't disappear with age or illness."
Support means seeing the person, not the diagnosis. Rights don't disappear with age or illness.
Ultimately, Dr Sinclair says, the project's success will be measured by whether people with dementia feel heard, respected, and empowered to make their own decisions.
"Change is possible," says Dr Sinclair. "But only if we stop talking about people with dementia and start talking with them."
